Posts Tagged ‘Interstim’

Yesterday, I updated my Interstim Device programming. Since having the device put in the second time, I’ve gone back and forth to the office to achieve more optimal programming. Knowing that my first device worked so well has encouraged me to not settle for “less than great” relief of my symptoms. It’s been a struggle to have, then lose, then have, then lose the ability to control my bowel symptoms. This cyclical life that I have been living for the past seven and a half years is overwhelming at times. However, I am remaining positive that this time, with this programming, a difference will be made in my bowel control.

My device has been reprogrammed. I am reprogramming. Not only my device, but my mind and body as well. I am encouraged that my device “feels” more optimal after this last set of changes. (time will tell). I am doing all I can with diet and exercise to support the medical technology within me. I am beginning to blog again, hoping to offer support in an effort to remember that my story is not mine alone.

Lately, I have found myself fixated on the fact that I just can’t work out. Because I fractured the wire on my first sacral nerve stimulator while engaging in aqua aerobics, I am worried, actually terrified, that something like that will happen again. Since my “go to” when my emotions run high is food, I am gaining weight. Gaining weight, mixed with an inability to exercise effectively, is a very wrong combination for me.

Prior to having my daughter, I always was an active person. I enjoyed training, competing, and reaping the benefits of a healthy lifestyle. After having my daughter, and extensive therapy, I was once again enjoying the benefits of going to the gym, being a reasonable weight, and a healthy person. I even found that I could exercise carefully and effectively with my first Interstim placement. Once pregnant with my son, and having my pelvic floor slip, being on bed-rest for 19 weeks, fracturing my Interstim wire, and recovering from another surgery, I have continued to lose that overall wellness I used to enjoy.

And I want it back. But, I’m afraid. I don’t want to fracture another wire. I cannot afford the type of trainer I would need that would be able to look at my x-rays, determine wire placement, and recommend safe and effective exercises. I cannot afford to spend weeks/months/years back in physical therapy. I need something, but, I don’t know how to access it or afford it. I really would LOVE to be able to get something in place for “spring training.” Any suggestions?

Almost a year ago, I published a post called, My “Adult” Movie. In this post I discussed the event of Medtronic producing a video about me in an effort to educate people about, and put a real face to, fecal incontinence. Although it’s hard to watch myself, I am proud of the message I am able to portray in parts 1, 2, and 3 of my story. I am linking the videos to this blog to allow others to easily access this information. In addition to my videos, there are many other helpful videos that were made at the same time, talking about different facets of Interstim. These can be found once you view the videos I’ve linked below. They will be in the sidebar. I encourage anyone who wants further information about my personal story, or further information about Interstim, to take a look.

Last year, I was approached by a woman very interested in my personal journey with my Interstim device. This amazing woman, Jennifer French, has co-authored a book about individuals and the way that neurotech medical devices have enhanced their lives. I am one of those individuals. Feel free to check out the press release and the book! Thank you, Jennifer, for telling my story.

As you may have noticed, I have taken an extreme hiatus from chronicling my life and progress on my blog. For whatever reason, be it moving houses , start of school year, 2 darling children that want their mother all the time, or starting a new job, my blog has been neglected, severely. Regardless of the reason, I have found lately, that it’s been all too easy to ignore this part of my life. Until today.

Today, two very important things happened in my life.

1. The bubble I’ve created around myself, the bubble that has existed as one of joy and wholeness from a fully functional Interstim device, has been shattered. Sadly, while doing a seemingly uncomplicated water aerobic move I felt a snag, then a jolt, then a series of shocks in the area of my implant. Upon further inspection, which included a week of me messing with programming, I realized today through x-ray images that my wires have moved. The incontinence is BACK, the pain of a failing implant is severe, and my mood is sour. Fortunately, all was handled expertly by my Medtronic Representative and rectal surgeon who have assured me that swift surgical repair of the wires will restore my functionality. Additionally, reprogramming of the device until surgical repair has offered some sense of relief. And I realized, this is why. This is why I need to continue to chronicle my own journey. The incontinence never goes away. This is a chronic problem. A chronic problem with a wonderful solution (Interstim), but a chronic issue nonetheless, one I will struggle with, for the rest of my life.

2. Today I responded to 2 e-mails. E-mails from women who have sustained incontinence as a result of nerve damage. Women who are happy that they have found my blog in their quest for validating their own journeys in unfamiliar and terrifying territory. And I realized, this is why. This is why I write my blog. My blog offers me solace, and it offers other people a hopeful message, an understanding, and peace while dealing with incontinence issues, mental illness, and birth trauma.

And this is why, why I will continue to write. Thank you for today, in validating my purposeand the purpose of this blog.

99 Calls. As of next week, including my scheduled calls, I will have placed 99 calls as a patient ambassador for Medtronic. In a little less than two years, I have spoken with 99 people regarding my experiences with Interstim. 99 “official” conversationsabout fecal incontinence have been expounded upon in an open and honest manner. 99 conversations that, prior to 2008, I could have never imagined having. 99 conversations that, on average, are 30 minutes a call, that’s 2,970 minutes, 49.5 hours, a little over 2 full days of talking about an issue that is stigmatized, traumatizing, and devastating to many people.

Modesty aside, I can say, I feel good about that. I feel great that I am able to do something, able to help people at the time where they are questioning their future with fecal incontinence. Able to alleviate fear and provide a sounding board for life’s stresses with fecal incontinence. I feel as though I am providing a service that I so desperately craved at my time of decision, at the time where I was wallowing in the woes and uncertainty of a future filled with severe fecal incontinence.

The most amazing thing for me, however, is that 99 calls is just the tip of the iceberg. The bowel disorders support group that I facilitate, the multiple e-mails I negotiate from my blog, and the conversations I have with people face to face all serve to get my story out there in an effort to let people know they are not alone! To date, this blog has been viewed over 17,500 times. It is hard for me to even wrap my head around that number. It is hard for me to imagine that those 17,500 + views have hopefully helped someone by educating them about my experience and hopefully provided empathy for the viewer’s individual experience.

I am grateful for the opportunity to share my story, and I invite you to pass it on.

At our most recent support group, we discussed living with chronic disease. Our guest speaker, a mental health professional that focuses on chronic disease, was extremely helpful in guiding our conversation. I guess it’s difficult for me to think of my condition, of fecal incontinence, as chronic disease. However, as with most bowel disorders experienced in our support group, the waxing and waning of symptoms throughout my life would define it as such.

Chronic disease and it’s impact on mental health can be severe. As I have shared before, mental health professionals and therapy were pretty heavy components in my healing journey from both the physical and mental ramifications of the birth trauma. In dealing with a condition day after day, a condition that is chronic, one needs to supplement their mental fortitude with strength from others as well as within. It’s not easy for me to know that I will be fecally incontinent for life. However, the facts remain that my sphincter is damaged, and without medical intervention, like the Interstim, I would be completely incontinent of feces. The fact remains that to this day I have good days and bad (mostly good), as well as a medical device that contains a battery that will have to be changed throughout my lifetime. The fact remains that I continue to have diet modifications, as well as, pelvic floor exercise suggestions that I am supposed to follow on a daily basis. The fact remains, I am living with a chronic disease, that, although manageable, can alter both physical and mental outlook.

So, what do you do when you realize that you are living with a chronic disease? According to our speaker, the number one realization that you need to make is that your mind and body are connected. So, even though your mind isn’t “causing” your physical body ailment, your mind can alleviate some of you physical symptoms, or in turn, make them a lot worse. Emotional distress can be the very thing that contributes to chronic disease symptomology getting physically worse. By recognizing this fact, often in treatment, one can pay attention to emotional stressors, thereby problem solving and potentially increasing tolerance for the emotional distress so as not to have it manifest itself physically.

Too often, our anxiety about a chronic disease creates a negative feedback loop that, in turn, creates real physical problems, exacerbation on the underlying chronic illness. It is only in recognizing this phenomenon that we can continue to heal our minds, in an effort to live with minimal disruption of chronic disease.

Recently, I had the distinct pleasure of engaging in a video shoot for Medtronic Interstim device for fecal incontinence. This video will serve to bolster Medtronic’s website for fecal incontinence by providing a real face, and story, to the issue. In coming to my hometown, Medtronic was able to interview me, my doctor, and my family, and capture the impacts on all of our lives from this phenomenal device.

After giving authorization, my family was included in the taping of this promotional video. In basing this video in reality, I thought it important to give the go ahead for my family to be portrayed. When trying to explain to my 6 year old daughter what the purpose of this video was, I found myself stumbling over concepts she may be too young to understand. When asked the question by my daughter, “Will this video be on TV for us to see?” I was able to give the easy answer of “No, it will be on the computer, on a website.” When asked the question by my daughter, “Will my friends be able to watch me?” I was able to answer, “Well it’s like an adult movie.” In summation, my daughter concluded, “Oh, OK, so we are making an adult movie for the computer website…cool, can’t wait to tell my teacher.”

UH Oh. Adult movie, computer website. I am seeing here that she requires more clarification. I show her my scar and proceed to tell her that the video is about “mommy’s surgery” and we will help tell others that need the surgery that they can get it and be happy and healthy families. Phew, bullet dodged. Although, frankly, sometimes talking about incontinence does have the same stigma as talking about “adult” movies.

About a month ago, I was asked to facilitate a support group specifically geared towards those suffering with bowel disorders. This group is the first of its kind in my area and I am humbled and honored that I was chosen to lead this gathering of individuals with similar issues. Honestly, even with the outreach to individuals telling them about this group, I was hesitant to think that we may have a large turnout to this type of meeting. It is an unfortunate truth that many individuals afflicted with bowel disorders remain silent…not because they necessarily want to, but more because society stigmatizes the ability to talk freely about issues such as these.

With great pride, I am pleased to announce that between 15 and 20 individuals showed at the first meeting. Brave individuals who summoned the courage to share their stories, listen with an open heart and mind to others, and work with me to shape future gatherings into meetings that are both productive and encouraging. I am truly blessed that I have been given the opportunity to facilitate these meetings. I am excited about the possibilities of shattering societal stigma, beginning with the small group dynamic, and spreading out into the general public by raising awareness of these very personal issues.

In an effort to remain supportive and informative to those needing and requesting some of my fiber secrets, I’m dedicating a space on my blog to Konsyl. What is Konsyl? It is a fiber supplement that was recommended to me by my rectal surgeon. I take it every day and it allows my bowels to work in harmony with my Interstim implant. I have found this supplement provides me an easy way to incorporate additional fiber into my diet without ingesting large amounts of food. Through daily exploration, I have found some pretty tasty ways to make Konsyl a part of my daily routine. If you, like me, need to up your fiber intake, I invite you to try Konsyl as a way to get what you need.

My favorite Konsyl recipe:

8 ounces Vanilla Almond Milk

5 Frozen Strawberries

1 Teaspoonful Konsyl (Original Formula)

Place Vanilla Almond Milk and Strawberries in Blender. Mix until smooth. Add Konsyl. Mix until incorporated. Drink Immediately. (It is important to drink any Konsyl beverage immediately due to the nature of the psyllium fiber-read warnings and instructions on supplement directions)

I hope to add more Konsyl recipes here in the near future. For now, I encourage you to start adding fiber to your diet, regardless if you “need” to or not. For more fiber recipes, check out this Bran Buds post or this Bran Buds post.